RA or Vagal tone ?
Posted: 06 March 2017 07:44 PM   [ Ignore ]  
Total Posts:  1
Joined  2017-03-01

I’ve had a myriad of multi systemic issues since giving up smoking, it seems autoimmune and many are cyclical and/or intermittent
I still have bouts of inflammation but I seriously wonder if the vagus nerve isn’t responsible for a lot of these issues.
I have several reasons for thinking this
I have rs 1799807(A;G) (Butylcholenestrinase deficiency) and 1800255(A;A) (Col3a collagen polymorphism )
Prior to the onset of these issues I had just quit smoking (perhaps nicotine was helping activiating my vagus the whole time)
and I think my FAMILY history has some clues.
My Grandmother had Mitral Valve Prolapse and died fairly early from a stroke.
my mother has asthma / copd and had very bad chronic fatigue for several years, she also nearly died from anesthetic ( succinylcholine, she can’t hydrolise)
My heart rate variability is REALLY low , RMSSD= 10-25 on average, best Ive ever seen during breathing is 40.
It’s clear I don’t have Ehlers Danlos or POTS in a full blown sense, I have “slightly” stretchy skin and eyelid hyperextensibility but nothing like what Ive seen, I’m not hypermobile either!

So I’m left wondering if Dr Driscolls vagus nerve product might help me. Has anyone heard of osteoporosis or rheumatoid arthritis issues being vagus nerve related or am I barking up the wrong tree. 

I quit smoking (NICOTINE) in 2014 and had some amalgam fillings removed about the same time.( some drs think this might be an issue but other think definitely not)

I was then hit with a variety of symptoms
Symptoms I still experience daily are marked with an (*), (C) =Cyclical, (R) Rarely

Initially I felt irritable and anxious,
(C)I had sore prickly lungs and some costochondritis,
white tongue,
very cold hands/feet,
hot flushed feeling in face,
(C)sore ligaments/muscles
ok in morning, got very tired in afternoon evening,
sore joints/muscles feel itchy/irritable

I noticed my heart would skip beats at the top of inhalations
*My tongue would tremor if I stuck it out
Felt disconnected from my body
Couldnt walk in straight line if I wasn’t looking directly ahead
Balance problems in the dark
(C)I developed shocking dandruff
(R)I would wake up regularly with shocking headaches
(R)I would firmly clench my teeth at night
I had massive myoclonic jerks during sleep
I made pelvic thrusting type motions in my sleep and felt compulsions to make these as I awoke ( not part of dreams, nothing to do with sex) possibly plmd
(C) I had smaller jerks during the day
(C) Unintended or exaggerated movements when making a small movement

I had tremors when my thumb when holding things at 90 degrees bend ( but usually when tired/ or after exercise)
I would catch myself rolling/twistng my ankles, rubbing my skin and making a suckling type motion between my tongue and the roof of my mouth. I would feel the need to compress fingers and toes, suck cheeks between teeth etc. These stimming like behaviours became habitual for about 6 months.

Then within 4 weeks .....
My gums started to bleed at the sight of a toothbrush
I had constipation ,bowel motions 5-7 days apart
Headaches, back of head, (creating nausia), lasting for several hours, sometimes days, accompanied by bloating
(C)Woke with bone dry eyes
a light weak voice
(C)-feet often feel slightly numb/tingly at night before sleep
Placed feet in cold water- very painful ( 1 day, 1 instance)
-Several sore points ( pin point areas) middle of back near ribs ( 1 major instance)

I developed the basics of essential tremor but it would come and go

- slight ‘aches’ in my hands / wrists an electrical / carbon sensation
-occasional inward breaths are “jerky” ( 4hz)
My mouth would generate more than normal saliva ( quite manageable however)

My mood during this whole time was actually quite good, One doctor felt I was paranoid/anxious for researching everything but at this stage there was no anxiety.

*I developed benign fasciculation syndrome in my feet/calves and sometimes this travels around the body
(C)I also have part time sjogrens ( dry eyes and nose ( predominantly at night) but no issues with mouth

With 6 months I suffered week after week of extreme fatigue, waking with tight calves
(C)a dry sensation around my back/kidneys
stomach bloating in mornings

Another month later (8 weeks)
Sore wrists, first and 2nd joints are sensitive to pressure, sometimes have spots near joints that last for a few days then fade, fluid in sacks near wrist.
Bones are sensitive to pressure but not seeing any visible swelling
all extended muscles shake , especially on release, even legs/core/eyelids, fingers quiver laterally

Quite regular Raynauds ( cold fingers/toes) VEry White

I started having fainting episodes ( 2 outright and 5 I managed to catch before passing out), all whislt talking, whilst standing up, I had plenty of warning though felt them coming on 2-3 minutes before hand

Then, almost a year later now my blood sugar starts playing up, just occasionally, would stay elevated after eating for 3-4 hours.
Same meal different day, it would be back to normal in 2 hours.
I also have OCCASIONAL cloudy/foamy urine
OCCASIONAL orange stools.(Bile?)

Ive also seen changes in my fingernails (formation of beaus lines, a rounding of the nails and red tissue under the ends) seem very thin and soft)

I assumed and still assume it’s rheumatoid arthritis or lupus, with sjogrens and raynauds ( no blood tests show any inflamation or antibodies)

I tried different diets, vegan, gluten free, ketosis, even fasted for a while. I did my 23 and me and ubiome and then quite by chance tried the “wim hof” method ( basically hyperventalation and cold showers), in a nutshell this stimulates the vagus nerve
This combined with nicotinimide riboside made a significant difference.
Within a week I was up and walking around, within 6 weeks was walking up hills for 45 min/day and since then I’ve generally been much much better.

Posted: 24 March 2017 08:55 AM   [ Ignore ]   [ # 1 ]  
Total Posts:  1418
Joined  2011-04-19

Hi there! You are absolutely right! The vagus nerve is a “nicotinic acetylcholinergic nerve”, meaning nicotine can encourage vagus nerve function. Many people who try to quit smoking develop constipation and go back to smoking just for that reason! Parasym Plus is HUGELY helpful for folks who are trying to quit smoking by helping to maintain vagus nerve function (while crossing the blood brain barrier to boost acetylcholine for brain function—something nicotine cannot do). Because the vagus nerve is the antiinflammatory pathway of the body, this can help control inflammation, too. wink


Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese